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Wednesday, July 16, 2008

Guilt is a Dirty Little Secret

A mother of an 18 month old in my class asked me today if she could bring her older son along for the last three weeks of our session.She said, "If it's not okay I understand. He's five." Here she looked at me closely, something flickered across in her gaze, searching my own. "He's autistic." She sucked in her breath and waited for my response."I would love to try that," I told her. I meant it; she knew. She wanted to say more. I smiled, hoping that she would take that to go on."It's just...he's just....well he's not really five. He's always had some delays...but...well...music has always been good for him...I just want...I hope...." Her words lost their shape, floated like thin clouds into the ether.I wanted to hug her."My son is in an ABA program," I said."Does he have autism?" was her fair enough and predictable answer.I shrugged. "I don't think so. The ABA is for speech therapy. I think he has verbal apraxia, but we have yet to get that diagnosis. Or assessment for that matter!" I laughed as I told her how comical but sad it was to listen to Bubbles' own indecipherable language tumble around his mouth. I told her that I certainly have concerns about it, as Bubbles' vocabulary seems to be increasing, but his articulation is not improving at an expected rate.She commented that I seemed to be handling it well, and I responded that we had been through early intervention before with Elijah, of course we were hoping for a different 'outcome' this time... She grinned at me and asked if we could go out for coffee sometime soon to talk about ABA (her son is just starting a program) and everything else in the world. Aha! I have sucked another friend into my world!Her son received the diagnosis just a few months ago. That part shocked me. But it also reminded me of how fragile our concepts of our children really are.She actually knew long before the diagnosis. Of course she did. He is five.There is so much wrapped up in a diagnosis. Maybe relief, maybe shock, mourning, fear.And guilt. Let us not forget guilt.I have a secret.I usually think I am the only one with this secret, but the sad truth is that most mothers in my position have their own secrets.We, above all medical professionals and developmental specialists, know what is wrong with our children. We are sure we know what made them different.Because, you see, we grew these children. So of course we must be the source of their pain, their differences, their challenges.I am sure that my childrens' picky eating habits are one of my lower gene pool swimmers, and I feel horrible about that. It also makes my life as their mother who needs to feed them very challenging. Dh knows that our kids are freakishly stubborn because of his own gene pool. We all know that we will pass some of our traits along to our children; others will be unexpected.But growing that baby? Is delicate work.Every time a child comes out looking like what you may consider 'perfect' (you who all counted toes and fingers), I consider it a miracle. Those are the kinds of miracles that I even consider at all. Every baby who is born with the ability to suck? Another miracle. Babies who grow and learn to sit up, crawl, and walk? Wow. Lucky. Seriously gifted.Children who learn to talk, converse, hug, function? Don't get me started on the fireworks of miracles happening there.When pregnant, most us of spent some time dreaming about that little nugget with limbs and her future. There were, of course so many variables, it was hard to actually picture her. And in the name of freedom of personality, who would dare to try? But really? Would there be sports in my future? Because I hate the sports. Would she want to go to college or move to Costa Rica? Would she want to get married someday? To a guy? Would she do my bidding and eat the homemade pureed organic spinach brown rice babyfood (no), wear her hair in long braids and favor smearing homemade jam on her homemade pinafores as I homeschooled her? (no, no, and no)And he? Would he be taller than his tiny sister? Would he want to take ballet? Would he want to live with us in his twenties? Would he sleep through the night?And of course....did you get the prenatal testing done? Phew, because now you can stop worrying about those 3 things that they can screen for.Because you of course are spending all your free time wondering if he (or she) will have a neurological disorder, developmental delays, autism, apraxia, PDD/NOS, etc.Oh, not?No, me neither. Until it happened once. 'It' being merely something different. Something mysterious, yet unexpected and glaringly different.And then we had this little window, this snippet of time to hold on to this mysterious, glaringly different, and glaringly precious bodhisattva before he moved on. *poof*But on the days when I am feeling less gifted and more cheated, he was not a bodhisattva. He was just not given everything exactly right. From me: right time, right place. When I was growing him, of course. If something went wrong there and then, I do believe that all of the rational thinkers and doctors in the world could never convince me that I was not at fault.There were all those drugs pumped into me for six weeks. I consented; I was told it was the best thing for my baby...to try to keep him from coming too early (he never did). There were the weeks of hyper-emesis and weight loss, the weeks without vitamins or solid food of any kind.My dirty little secret: My child was different because I grew him wrong.We're in the park of differently-abled people again, but on a different ride. This time around we are dealing with what has been classified as 'a severe expressive language delay'. His supervisor for speech therapy and ABA (all of whose services we will lose in 3 months) is extremely confident (her words) that he does not and will not meet the criteria for a spectrum diagnosis, though she shares my concern about the verbal apraxia and is arranging for an assessment. Not that a diagnosis of apraxia would get him any more services after he turns three, at which point we are basically going to get screwed by the school district: fact. Stay tuned.So here I am again hiding my little secrets. When I was pregnant with Bubbles, I didn't eat enough vegetables, I forgot to take my prenatals on purpose when I was nauseous in the beginning, and in the last trimester, I drank a full glass of wine on more than one occasion!I screwed him up; I totally never gave him a chance to talk pretty.Secrets.Exposed, now.

14 comments:

Inzaburbs
said...

As the mother of a child who hardly talked until he was almost 4, I just want to say to you straight up that however your children are, it is nothing you did. We consulted one of the foremost experts on developmental and language delays and as I started on my list of all I had done "wrong" I heard a sad little sigh and "Mothers always think it is their fault. It isn't".

Yes, maybe in some way some things are your fault. That is, if you can help what is in your genes. Can you?

I am convinced we are all different in some way. Someone once said - and I wish I could remember who it was to credit her - that we are all on the spectrum. The human spectrum. Some are better at appearing "normal" than others and I guess that is just their "guilty little secret".

I could write a novel, but I think you get my point. To anybody reading this who has questions about late talking, I have been through and (almost) come out the other side. Feel free to hunt me down and email me :-)

That was beautiful. Motherly guilt is horrible. I know I passed my "mental illness" gene to my daughter and I cannot tell you how much I hate myself for it. I think you're an amazing mother for caring so much about this.

Aw G my friend,What mother doesn't feel guilt about their childs imperfections? I decided awhile ago that I wouldn't feel guilt anymore where Cameron was concerned. Instead i celebrate and laugh every time I see his crooked little feet run like Forest Gump!So girlfriend, YOU DID NOTHING WRONG! Do I need to come over there and bitch slap you?Love ya.

You know,my first is pretty nearly perfect physically and mentally. At least in a normal development type of way. I don't get to take credit for his really athletic little body, that comes from my husband's side, but I messed mine up too.

You see, he's a perfectionist. He won't try things unless he knows he's going to get it right the first time. He's bossy. He's a know it all. And it's my fault. He got it all from me.

I don't want to make light of the burden that moms with children who are born with physical disabilities carry. I know I am extremely blessed in my little miracles.I just wanted to say that that guilt thing? It's every mama's dirty little secret.

I can thoroughly relate to the idea of Mother Guilt. Bettelheim's refrigerator mother concept may have been poo-poo'ed, but being the 9 month incubator for a child makes you wonder if something you've done--or even not done--contributes towards the developmental delay--AT ALL.

My six year-old son is autistic, and I try my best (not always successful) to not beat myself up regarding the endless "if I'd done things differently" scenarios.

I probably told you this but of course can't remember:) My daughter Charlotte is 3.5 and has apraxia. She gets services thru the school district now, tho we're still fighting the insurance company to make them pony up, so far no luck. We lucked out with the school district though--she gets 2 half hour individual sessions. And by "lucked out" I mean that that is really hard to come by. But bc her apraxia is more on the severe side, she needs 3-5 hours a week. Me, myself and I make up the difference.

WAAAAA! This made me cry. My baby boy has ptosis in his left eye, which means he can't open it all the way and it will require surgery before he's 5 (probably). I'm convinced it's the three beers I had in month 7!

Bless you, GwendoMama. Thank you for feeling with me when I approached you last week. I have that *feeling* that you and I were supposed to cross paths on this journey.Though in my heart I know it is wrong, I totally, 100%, abso-freakin'-lutely understand your feelings about screwing up your child. I go there way too often myself and try very hard to find my way back from those dark feelings. Bloody Marys soon? I'll actually have to go with a mimosa. Never was one for tomato juice :)